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January/February Newsletter

January/February Newsletter

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Published by JodieLyn
Jan/Feb 2009 Newsletter. Fibro Friends Forever has been created for Fibromyalgia and Pain Management Awareness. Its mission is to help those with FM & chronic pain disorders to change, grow and become stronger. Our goal is to make everyone aware of the issues that face those with fibromyalgia (chronic pain) on a daily basis. Education is the key to our health. Along with informational services, we provide email support group services. Soon to include a monthly, interactive support group meeting.
Jan/Feb 2009 Newsletter. Fibro Friends Forever has been created for Fibromyalgia and Pain Management Awareness. Its mission is to help those with FM & chronic pain disorders to change, grow and become stronger. Our goal is to make everyone aware of the issues that face those with fibromyalgia (chronic pain) on a daily basis. Education is the key to our health. Along with informational services, we provide email support group services. Soon to include a monthly, interactive support group meeting.

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Published by: JodieLyn on Feb 17, 2009
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symptoms of fibromyalgia, including:Depression, Anxiety, Chronic Pain, Sleepdisorders, Managing stress, Chronic head-aches & Short term memory loss.NF is used for Chronic Fatigue as well,although this area has not been as thor-oughly researched.NF is often done in a clinical setting. Al-though the initial appointment may run aslong as two hours, the therapist will needto review medical and family history,meetings thereafter will likely last between40 minutes and an hour.
how oftenone will need to go for a "training session"will depend on the issues patients are seek-ing help for as well as the results hopedfor. Anywhere from one to five times aweek may be normal. On average, mostpeople notice a change in condition withinthe first 10 classes,Similar to biofeedback, which we discussedlast time, Neurofeedback (NF), or EEG bio-feedback, helps reduce your fibromyalgiasymptoms by changing your brainwave pat-terns. Helpful for treating many symptoms of fibromyalgia, ranging from depression tochronic pain, NF can help eliminate discom-fort due to fibromyalgia. Wouldn’t eliminat-ing our discomfort be wonderful?!?NF is an easy and pain-free form of fi-bromyalgia treatment, it allows a person to"learn" a new way of creating brainwaves. Byaltering brainwaves, the negative fibromyal-gia symptoms associated with old brainwavepatterns disappear. The main goal of thistherapy is to give a person the consciouscontrol to alter their brainwaves.During a NF training session, electrodes areplaced on the scalp and ears. The preciselocations for these electrodes will be deter-mined by the NF practitioner. Once in place,the electrodes will send a signal to a com-puter, which then translates these signals toreflect brainwave activity. The therapist willbe able to see brainwave patterns on onescreen while for the patient, the feedback will be relayed through video, sound, orvibration.There are many different disorders and ail-ments that NF has been shown to be usefulfor. The most widely researched is ADD/ ADHD, although its use in treating thosesuffering from seizures, teeth grinding, andcerebral palsy, among other things, has alsobeen examined. The role NF has in treatingfibromyalgia has also been lightly studiedwith positive results. NF has also beenfound helpful for treating a number of 
Just as there are many, many fibromyalgiasymptoms, there are just as many treatments.Treatment for fibromyalgia is very comprehen-sive and usually involves more than one healthcare provider. This could include: Your familydoc, An Internal Medicine doc, a Neurologist, aRheumatologist, a chiropractor, occupationaltherapist, physiotherapist, etc. Currently I amusing my Family Doc and a Neurologist.With all types of treatments, the goal is to mini-mize our symptoms and improve our generalhealth. Brain mapping is one diagnostic proce-dure that can help to better identify certaindiscomforts. This can help us to receive appro-priate treatments. Furthermore, since thesymptoms of fibromyalgia come and go andchange, treatment is an ongoing process ratherthan management of a single episode.With the help of our health care provid-ers, we should be able to come up with aunique treatment plan that addresses
 our own
particular needs. Our treat-ment plans should continually change asour condition changes. Since individualmanifestations of fibromyalgia varyfrom patient to patient, so do most suc-cessful forms of treatment. Finding ahealth care provider that provides uswith our own proper treatment is essen-tial. Hopefully the tips you read in mynewsletters will help you find the rightdoc and help you to build a healthy rela-tionship with him/her. My hope withpublishing these newsletters is to helpyou to work with your doc in finding thebest treatments for your individual case.What works for one patient may notwork for another. While one person mayprefer a specific type of treatment, likemassage therapy or heat therapy, anothermay find biofeedback or guaifenesin ther-apy to be more beneficial. Same withmedications. What works for one patientmay not work for another. By workingwith your health care team, you can findthe appropriate type of treatment just foryou.Finding a doc or specialist that you preferand that works with
is very important.Finding the right medical treatments thatwork for
is also important. Communi-cate with your doc. It may take a few dif-ferent types of treatments before you findthe right one.
Alternative Therapies forPain management
This month: Neurofeedback
Medical Treatments for FM  
January/February 2009Volume 2, Issue 1
Butterflies are symbols of metamorphosis. Fibromyalgia gives us the opportunity tchange, grow and become stronger. 
Continued on Page 4
 3. Your doctor dismisses all alternative treatments as quackery.
 Are you hesitant to tell your doctorabout supplements you’ve been takingfor fear of the lecture you’ll re-ceive? Does your doctor make youfeel foolish if you inquire about an alter-native treatment like acupuncture ormassage therapy? It’s time…
 4. Your doctor refuses to look at ANY information you find on the Internet.
 Does your doctor reject anything foundon the Internet regardless of thesource? Is your doctor unaware of thefact that there is a great deal of quality,respected medical information availableon the Internet (for example, most majormedical journals, National Library of Medicine), or is anything found on theInternet dismissed without further inves-tigation? If so...it’s time...
 5. Your doctor is unwilling to consider your ideas.
 If you ask to have a lab test run or re-quest a new medication, does your doc-tor usually refuse without explainingwhy? When you express concern aboutsomething, such as a symptom or medi-cation side-effect, does your doctor tellyou not to worry about it without ad-dressing your concerns? If you say youthink you might have a particular dis-ease or condition, does your doctor say,“No, you don’t have that” without tell-ing you why that’s not a possibility?It’s time...
6. Your doctor refuses to refer you to a specialist.
 If you ask for a referral to aspecialist, does your doctor refuse with-out explaining why? (It took my Docabout 4-5 months before he finally letme see a specialist) Is your doctor of-fended if you ask for a second opinion?It’s time...
7. Your doctor views each appointment as an isolated event.
 Does your doctor fail to review yourchart at each appointment to refresh hismemory, look for symptom patterns,and observe treatment history? Do youget the feeling your doctor has no ideawho you are? Does your doctor treatyou like a new patient, asking you thesame questions you were asked at yourlast four appointments? It’s time...
8. Your doctor is rude, arrogant, orinconsiderate.
 Is your doctor’s attitude one of “Dowhat I tell you to and don’t ask ques-tions”? Does your doctor make you feelas if you are wasting his valuabletime? Does your doctor talk to you in acondescending or patronizing man-ner? When you ask a question, doesyour doctor ever make you feel foolishor stupid? Does your doctor routinelykeep you in the waiting room for severalhours? Do you usually have to leavemultiple messages before getting a re-sponse? It’s time...ple of their questions that they mayhave.
4. If you are having mood swings, ex-plain yourself and that you don’t think you would make good company. It’sbetter than being a “brat” to someoneand they won’t resent you.5. Don’t tire out relationships with con-stant complaints. They want to be therefor you, but not if we are always com-plaining.6. Offer to help others when you can.That way they won’t feel that the helponly goes one way.I guess the best thing is to provide infor-mation. The more they understandabout FM, the more they will understandyou. Your relationships with friendsand family will be so much better. Your family is not sure what FM isand even worse they are not sure howit affects your life. What are yougoing to do? It can be frustrating onboth ends. Look at it from both viewpoints. You are thinking…”they need tounderstand you and what you are goingthrough”...They are thinking…”I don’tunderstand, she looks fine, why is shebeing this way?”…Well here are some short but sweet thingsyou can do for them: 1. There are brochures available withgreat info that you can give them. Alsoproviding them with some print outs fromthe internet can be helpful. However,don’t overwhelm them.2. Asking for help is not easy, but lettingyour friends and family know if you needhelp can be helpful to both you and them.3. Have one of them go to the doc withyou. Maybe if the doc has a couple min-utes he wouldn’t mind answering a cou-
Is It Time To Find A New Doc?
Page 2Volume 2, Issue 1
Ok, now that you have learned tofind a new physician, and how tocommunicate with him, now weare going to learn when it’s time to give upthe doc you have and find a new one. Ishould know, I have had to do that.I know that once you have established arelationship with a doc, it is hard to decideif it is time to go looking for a new one.Our relationship with our docs is personaland if we have been with the same one foryears, it is even harder to make that call/ decision to find a new one. So, if you areunsatisfied or unsettled with your currentdoc, and not sure if it’s time to start look-ing for another, here are 10 signs to look for:
1. Your doctor doesn’t listen to you.
 Does your doctor routinely interrupt youafter one or two sentences? Do you findyour doctor attending to other matterswhile you are trying to explain yoursymptoms? (i.e. answering his cellphone while with you) Does your doc-tor repeatedly ask you questions you’vealready answered? It’s time...
Your doctor doesn’t believe you’re really sick.
 Do you find your doctor frequently at-tributing your symptoms to age, stressor hormones? If you have a chronicillness like fibromyalgia or chronic fa-tigue syndrome, does your doctor dis-miss it as either non-existent or a“wastebasket diagnosis”? (Minedid) Does your doctor imply that mostof your problems are psychosomatic?It’s time...
 Helping your Family Help You
ALWAYS STAND BESIDE LOVED ONESwith Fibromyalgia and support the patientsquest for a better quality of life.
ACT AS AN ADVOCATE to insure that lovedones receive the best possible medical care.
BE RESPECTFUL OF LOVED ONESPHYSICAL LIMITATIONS and help, or gethelp, when it is needed.
EDUCATE OTHERS about FM and encour-age them to provide people with FM supportand understanding.
ADVOCATE for improved treatments, ex-panded research and increased awareness andacceptance of FM.
UNCONDITIONALLY LOVE the people inmy life who have FM.
is expected to be in pharmacies byMarch 2009
Check with your insurance companyabout alternative therapies. If theydon’t cover them, they might havediscounts for them. NF is a great ex-ample of what you could ask for.
Happy ValentinesDay
You also need to stay in touchwith your fibromyalgia specialistwhen symptoms flare.
How does fibromyalgia affectpregnancy?
Along with weightgain, your body is out of balance,and your shape takes a differentform. There are few studies onfibromyalgia in pregnant women.However, a recent study at Tem-ple University found that womenwith fibromyalgia had moresymptoms of pain during preg-nancy than women who did nothave fibromyalgia. Also, fi-bromyalgia symptoms seemed tobe exacerbated during pregnancy.Pregnant women with fibromyal-gia may experience significantpain, fatigue, and psychologicalstress, especially in the first threemonths. With pregnancy, thereare changes in the levels of estro-gen, progesterone, and other hor-mones. Also, since the time aftera pregnancy can be difficult formothers -- even those withoutfibromyalgia -- it's important tobe aware of the possible increasein pain and other symptoms thatmay occur after giving birth.
Are fibromyalgia medicationssafe during pregnancy?
At thistime, no fibromyalgia medica-tions are completely safe to useduring pregnancy. In fact, doctorsrecommend that women withfibromyalgia go off of painkillersand antidepressants before theybecome pregnant. However, besure you talk with your doctorbefore you stop any medicines.
What treatments are recom-mended for fibromyalgia dur-ing pregnancy?
To avoid lettingfibromyalgia interfere with preg-nancy, know what steps you cantake to ease the symptoms. Thesafest treatments for pregnantwomen with fibromyalgia mayinclude massage, exercise, yoga,meditation, and rest. If you sufferwith fatigue and ache all over,make sure you rest 20 to 30 min-utes at least two or three times aday. A warm shower or bath is agood way to ease pain. Also, usegentle stretching exercises andexercises recommended by yourdoctor for relief.(Continued on page 4)If you have fibromyalgia andare thinking about gettingpregnant, it's important tolearn all you can about bothconditions. Sometimes, symp-toms of fibromyalgia -- suchas pain, fatigue, and depres-sion -- are thought to be signsof the pregnancy itself. As aresult, they may be under-treated. In addition, the addedstress of having a baby maycause fibromyalgia symptomsto flare, making you feelmuch worse.Managing fibromyalgia dur-ing pregnancy is possible. Butyou need to spend time learn-ing about the effects of preg-nancy on symptoms of fi-bromyalgia syndrome (FMS).
Whats New In the News?
And other announcements
Page 3Volume 2, Issue 1
Well, if you hadn’t noticed, I added apage to the newsletter. Since some ofmy articles have been going longerand I have had to cut so many of themshort, I added this page so I can use itas a “continued” page for those spe-cific articles. I hope y’all don’t mind.Check it out, I am getting ready tostart my second year doing this news-letter. March will be one year since Istarted. I can’t believe it. It is so ex-citing and it gives me some new moti-vation.
For links to back issues of thisnewsletter, you can find them inmy blogs on www.myspace.comfibrofriendsforever.Savella was approved by the FDAfor the management of fibromyal-gia on January 14, 2009. While itwas in clinical trials, Savella wasknown by its generic name, mil-nacipran HCl. Savella is a selec-tive serotonin and norepinephrinedual reuptake inhibitor. Savella
Fibromyalgia &Pregnancy 
Fibromyalgia &You
All material in this newsletter is providedfor information only and may not be con-strued as medical advice or instruction.No action or inaction should be takenbased solely on the contents of thisnewsletter. Instead readers should con-sult their physician or other qualifiedhealth professionals on any matter relat-ing to their health and well-being. Read-ers who fail to consult with appropriatehealth authorities assume the risk of anyinjuries. The publisher is not responsiblefor errors or omissions.

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